Ashley's Story

She will leave fingerprints all over your heart


Where to begin?

I'm not sure. So much has happened it's hard to keep it all straight in my head. I'll start with the basics. 36 hours straight of vomiting every thirty minutes . A bun level of 65 and a creatinine number of 2.68. Only 100ccs of urine in more than 48 hours. A prograf level of 30(should be 3-5). 65ccs per kilo of stool output. All of this earned us a stay in the picu . Along with that stay a foley catheter was inserted giving us a very confused and very angry 4 year old.

Things would like to spin out of control but I am doing my best to keep that from happening.

In all honesty Dave and I believe she is on the mend. She looks amazing today. Her labs don't, but she does.

So what happened? I wish I had a full keyboard to write it all out but I don't. I'm typing on the phone. I'll just say this... Treat the patient not the labs. Had that been done we would not be in this trouble with Ashley Kate. All of this could have bern and should gave been avoided. I'll explain if I ever get to a place with a real keyboard.

Tomorrow they plan on taking ash into surgery for a biopsy of the bowel and a central line. It's not what we believe to be in ashleys best interest but it is what is happening . I think we will be causing more problems and taking more risks than what the few answers that may or may not be found are worth. Our only saving grace on all of this would be to receive good numbers on her morning labs.

We want to go home we want our life back. This is not our life anymore and to be facing such uncertainty is really more than my heart can bare. Ash is so unhappy here. She is hurt and angry and confused. My sweet girl feels betrayed by me as I stand by and allow her to be hurt day after day. This is getting harder and harder the older she gets and the longer times she is given between admissions. Her mind can not understand what is going on around her and why I'm allowing it.

More than anything I want to wAke up in the morning And see that this was just a nightmare .


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